Surgery follow up and pathology report in!

Stitches are out.  We redid steristrips on one incision, but it is OK. My range of motion without the stitches in is pretty good. I may actually have slightly better internal rotation at the shoulder, but going directly overhead hurts at about 15 degrees from vertical.  No need to stretch things out or stress my incisions right now. I am still supposed to take it easy till next week when I can go back to CrossFit.  Yeah,  CrossFit! Per the surgeon, if it doesn't bother me, it's fine.

The post surgery telephone game on the day of was not entirely accurate, but I got the details officially today. Only one lymph node was taken, and it was clear. The wide area excision did not initially have a clear medial margin as assessed intraoperatively, so additional tissue was required all around.  Happily they were able to do it while I was still under so only one tumor incision. There is a slight contour due to loss of volume, but all in all, I am pleased.  The cancer is out and you can hardly tell. After the swelling goes down over the next week, and a year after radiation ends, if I want to have some tweaks made, I can. That said, even with the way things are right now, no one would ever know in a strapless dress, a sports bra or all but the skimpiest of bikinis. And, I don't wear super skimpy bikinis anyway. Radiation apparently works wonders on scars, so they should not be an issue at all!

In terms of the tumor removed, it shrank from 2.7 cm to 1.9. I did not get a complete pathological response, but I still have a lot of treatment left with radiation, Herceptin, and anti estrogen and anti progesterone therapy.  We are still in a good place. At least that is what I keep telling myself.  Blood flow to the tumor was good, so the chemo was really getting in there. There was no evidence of invasion into the blood/lymph vessels or nerves, which is good.  I had worried that because I had a great response during chemo rounds 1-3 and no discernible improvement after chemo rounds 4-6, that my tumor had somehow figured out how to deal with TCHP. I asked if I had a recurrence whether I was likely to still respond to chemo.  My surgeon laughed and assured me that yes, I would.  It is kind of funny, but it is MY tumor so I would not be surprised if it figured out how to outsmart chemo. Hopefully, there will never be a recurrence. 

I also asked about lymphadema prevention, and I got a referral for Dec. 1. I hope it's a non issue, and I think my surgeon thinks it's likely to be a non issue.  Still, I am glad to be going. Better safe than sorry. 

I am feeling pretty good, but with as much as I have been through, I am in no rush back to work.  I am taking all my planned leave rather than going back early.  I feel like letting myself focus on healing and trying to build back up my energy reserves before radiation begins is the right choice. I still don't have nearly the get up and go I did before chemo, and with fatigue being the most common side effect of radiation, I think it is wise not to make myself do too much too soon, even if I possibly could.

Otherwise, I am enjoying the brief warm weather and being, as best as we can tell, finally cancer free!

Bandages off...

My incisions 36 hours after the start of surgery, photo taken just after taking the bandage off for the first time. 

Surgery day retrospective

There was a lot going on yesterday. 

5 am wake up, packed bag with button up top PJ's

5:30 am showered with Hibiclens, a 24h long lasting antiseptic, from neck to waist, as I did the night before.  No deodorant or lotion allowed.

6 am departed for hospital

7 am check in on ground floor of Sibley in surgical suite, gave insurance cards and id's, signed multiple forms, given a patient number so my waiting family could check my progress on the big screen without my name up there for privacy reasons.  Was led back to change into a gown, robe, and socks. Nothing else permitted. No jewelry or underwear.  Urine sample taken, vitals taken, 123/75 BP and 69 HR if I remember right.  Then I was led to a draped area, room 1, and my family could come back, no more than 2 at a time. Various nurses and a PA stopped in. Wendy? Linda?  All lovely. One got my IV started, another got me a metallic cap to keep the heat in on my fuzzy head.

8 am Lymphatic mapping. The nurse came first and did a great job explaining the procedure Dr. Alan Crohnwall would do. The syringes came in a little kit with such little radiation (1 mercurie?) that no lead was required.  The needles were tiny at 27 gauge, even smaller than the ones I used to inject my lower abdomen during the oncofertility process.  They told me that people react differently and that the 4 injections do not always feel the same. The injections are made peri-auricular (?), meaning in and around the nipple at 3, 6, 9, and 12 o'clock.  Injection number 2 at 6 o'clock hurt like a bee sting, but the rest were OK! Apparently this is one type of needle stick that doctors do not practice on themselves/each other.  Ha! In any event, it was not nearly as bad as I imagined.  No one told me I would pee blue for 24h though.  My surgeon Dr. Magnant stopped by and said hello, cheerful as ever and brimming with energy.

9 am a nurse came to get me up to walk me over for the wire localization procedure. I walked across the surgical suite lobby to a room with imaging equipment.  The nurse Cynthia was awesome. Very thorough and precise with the utmost compassion at the same time.  Dr. Schlessinger was just the same. They double checked everything and took a time out to triple check me, my birthday and the procedure before initialling my right (correct)  breast.  Then we took a mammogram and compared it to the one from June.  The mammogram has a grid they use to determine needle placement. I lined up at 9&3/4 and H.  Next, they injected me superficially with a numbing agent, then deeply with lidocaine.  Then they placed the needle.  It is essentially a needle within a needle. The outside one is larger at maybe a 20 gauge, but definitely smaller than the biopsy tool.  The inner needle remains in place and is about the size of an acupuncture needle, although much longer. It has a thicker section, which optimally will be placed in the tumor. Dr. Schlessinger moved the needle a little bit to get it lined up perfectly,  in his words, "textbook."  He was just adorable.  Nurse Cynthia rubbed my back during the procedure like a baby, and at first I was embarrassed but I actually was completely grateful for it.  We took two more shots vertically and horizontally to make sure it was spot on, then the big needle was removed and the inner wire was taped down. About 6" was still hanging outside my body before they taped it, so I did my best not to wiggle around or move it. Yeah, I looked. It was a little surreal to see it hanging out there from my breast, but I was glad it was set.

9:30 am The anesthesiologist and nurse stopped by.  Apparently the tube doesn't go all the way down your throat, but the gas can be irritating. I had no other questions. 

9:52 am I said goodbye to my sister and dad so my husband could come in.

9:59 am They started wheeling me into surgery and I shed big alligator tears as I said goodbye.  In a minute, I was out. Probably because I was crying, they thought it would help me. I was just sad about saying goodbye abruptly. 

11:15 am I woke up with the nurses in recovery. First,  dilaudid in my IV to take the pain down from a 6/10 to a 4/10. Two blood pressure readings,  two ginger ales and about 6 Graham crackers later, I got my clothes back and a nurse helped me put my clothes on from the underwear on up.  An ace bandage in lieu of bra.  I got two tabs of oral Percoset and was instructed to wait til 5pm to take another.  

12:15 pm my family came in to see me. They told me my surgeon had said she took two lymph nodes and they both looked clear.  No word on the exact size of tissue removed from the tumor area though.  Josh filled my prescription for oxycodone /Tylenol and brought the car around.

12:30 pm my nurse wheeled me out, handed me a heart shaped pillow for comfort, and we headed home! Percoset knocked me out, so I had a bit of soup and then went straight to bed.

5 pm dinner, but skipped drugs, just ice

8 pm bed, ice and drugs

2:45 am got up for ice, skipped drugs

6 am ice and Starbucks with my sister, rest of the day in bed resting and occassional snacking. No drugs. Still changing ice, which helps the pain.

I am not quite ready to take off the bandage, but that is coming tonight/tomorrow morning.  I am just so glad I do not feel as bad as I thought I would and nothing went wrong this time.  Overall, I am so relieved to be through this. I was carrying so much stress in my body. I am almost in less pain as my muscles and joints have relaxed from relief of the stress of anticipation.  I am also so glad to have another positive indicator that my lymph nodes are clear.  Overall, I feel like someone took a baseball bat to my right breast. Occasionally I feel the stabbiness of pulling on stitches, so I have tried to keep my right arm range of motion limited to less than 45 degrees and very little weight. I realized that closing my own passenger side door on the Tahoe was probably too much weight for that side.  When I walk, I also try to keep an even gait to avoid any unnecessary bouncing or jostling. 

My game plan is to continue taking it easy and get myself healed ASAP! I have leave through Thanksgiving and Black Friday.  If there is a major event on Black Friday, I will go into work, but that's it.  My follow up is Monday, November 24, and I should get the results of my pathology then.  Before then, I go in for a Herceptin only infusion, round 1/12, on Friday.  Blargh.  I can't wait for it to be over. I am already thinking about having my port taken out early so I can be done with surgery.  Just so glad to be through this huge milestone though. Theoretically, I am now cancer free.  A little more treatment(30 rounds of radiation, 12 rounds of Herceptin, 10 years of tamoxifen/aromatasse inhibitors to go), but the worst of it is over!

THE WORST OF IT IS OVER!

Thank you for praying for me. Thank you for sending good thoughts my way.  Thank you for reaching out and for your kindness in every way.  It helps, it is working, and I so appreciate it.  THANK YOU.

Made it!

Just a quick note.  2 lymph nodes.  Looks like they are clear.  Pain is manageable.  So glad!

It's go time!

Let's do this!

Surgery

In the lead up to surgery, I have been keeping super busy to avoid obsessing over what is coming Wednesday morning. 

Josh and I spent Veterans Day weekend with my brother and sister in law in New York City and had an amazing time reconnecting, wandering through shops and markets, eating great food,  watching the Seahawks game at a pro Seattle bar, and sipping whiskey and sangria against the backdrop of a live blues band.

Veterans Day,  I got to spend with some very lovely ladies at the most amazing spa experience I have ever had. So relaxing!

Had a great breakfast with a friend and coffee with another.

This past weekend, I went sky diving with a dear friend and ended up being surprised with a house painting /puppy play date party with others. We also decorated for the holidays. 

In days since,  I swept, vacuumed and did laundry like my life depended on it.

Tuesday, I had a busy day at work and ended the day celebrating the10 year anniversary of an international agreement I worked on for 7 of those years.

All these things I am taking with me into surgery, along with the notes and calls and texts I have gotten from so many others.  Thank you all.

Lastly, I listened to Leah Still's pep talk from her dad. ( http://m.espn.go.com/nfl/story?storyId=11585873&src=desktop) If a 4 year old can handle cancer surgery, so can I!  #leahstrong

Surgery logistics

I just had my mri and physical. The mri did not show any improvement in the tumor or surrounding enhancements since round 3 of chemo. Very disappointing. Chemo round 4 and 6 had a reduced dose of Taxotere and round 5 was delayed a week. I stopped fasting after round 3. And, I generally felt miserable the whole time. A lot of pain and suffering for no discernible improvement. My oncologist says it could be scar tissue, but I do not believe her. The whole point of an mri is to differentiate between cancerous and noncancerous tissue based on altered metabolic rate. If it still looks like cancer, it probably is. The mass is definitely still palpable although smaller. I really wanted a complete pathological response because the survival and disease free recurrence rates are so much better. I am pretty angry actually, but what can you do?

Physically I am doing much better. My platelets are still a bit low at 134, but close enough. BP 123/76, HR 69, Ox 99%. 10# fatter than before chemo. I still have a lot of congestion but they didn't seem to care. I told my oncologist about my back outside ankle hurting before I restarted exercise. I asked her if I should be worried about rupturing my Achilles, and she said she had never had that happen to a patient. She never had an ovarian hyperstimulation patient either before me, so I am not comforted by that response. My peripheral neuropathy is still pretty bad too. Also rather than let me have Herceptin only today or Monday,  she pushed it back again to next Friday. Now I will not be finished until after July 4 as I had hoped. July 9. Again, NOT happy. Between repeated delays, scheduling and computer errors, and a lack of returned phone calls, I am losing patience. Everytime I showed up for the horrible cocktail, my insurance paid them $30k. You would think that counts for something. I miss my old chemo nurse, but I am really starting to understand why she left.

The pre op physical nurse had very little information about what to expect after, although she was lovely during our visit. I walked in to the surgeon's office to ask the surgical coordinator my post surgery questions. She was getting ready to call me anyway because my surgery time got moved up. I also visited the radiation oncology office just to be sure the schedule was set.

Here it is:

Wednesday, November 19:
5:30 AM Wash skin at home with Hibacleanse for surgery prep
6:00 AM Leave home
7:00 AM Arrival and check in
8:00 AM Lymphatic Mapping Procedure aka injecting the breast ducts through the nipple with radioactive dye to see where it travels and therefore how many lymph nodes to take out during surgery
9:00 AM Wire Localization Procedure aka using radiology imaging to guide a needle into the center of the tumor so that the surgeon can make sure she takes enough out around the outside of the needle post to achieve clear margins. It is a surgical guide post.
10:00 AM Lumpectomy aka wide area excision, with sentinel lymph node biopsy (60-75m)
11:00-15AM Estimated time out of the OR, recovery begins (1h min req, est 1.5-2h) I have to be able to eat and drink a little without throwing up, use the restroom and have stable vitals before they let me go home.
12-1:15 PM Estimated time out of recovery and release to go home Get me outta there!

Friday November 21
3:00 PM Herceptin chemo infusion Round 1/12

Monday November 24
9:15 AM Surgery Follow up and Pathology report expected

Tuesday December 2
9:00 AM Radiation Simulation and Mapping

Monday December 8
TBD 6 weeks of radiation every week day, round 1/30

Each step has its own set of horrors, but it also gets me closer to done. There is no alternate route. There is only getting through. So bring it on. Let's crush this.

Up and at em!

(Apparently I neglected to hit publish on this post drafted Friday. #latergram)

Crazy week trying to get back to normal again. Email went down at work for days, yet I still felt beyond busy at work and home. I finally opened like a month of mail, that I was just too tired to handle between chemo round 5, the cold, and chemo round 6. Great, right? Kind of. I had all the other "to do's" that came out of that. I am still tired. It feels like I can only manage what used to be a normal day of productivity in three or four post chemo days. The new normal.  I am still doing stuff though!

I sleep a lot more now than I ever did before,  which seems to be one reason why I feel like I am getting less done. I just don't have time. Looking for ways to maximize efficiency, I am paying more attention to vicious time sucks... Like a 2.5h commute home one day when the Beltway backed up due to a terrible accident. I really hate my commute even on a good day with normal conditions. It's about 50-60m then. Metro would take longer. Sigh. There seems to be no getting around that.

In the car for the last few months, I have started listening to audio podcasts of Ligonier Ministry's Renewing Your Mind with RC Sproul. It is a great way to distract from the driving, think about things and be open to some heavenly guidance.  One on Monday really struck me, starting with these verses, "Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you" and "So then, those who suffer according to God’s will should commit themselves to their faithful Creator and continue to do good." I heard it the day after hearing Brittany Maynard eventually did take her own life, and of course after struggling with finding the (a!?!) purpose behind my own suffering as well.

Brittany's death made me sad and honestly a little bit angry. Ok, so she was 29 with inoperable cancer, certain to die a slow and unglamorous death. Being 29 doesn't make you special. Neither does dying. We all are going to die. Most people do not get to choose, and usually, cancer aside, death doesn't come announced.  Death is not pretty or glamorous for anyone. It is death! We are programmed to die. Even at the cellular level (and as explained in this awesome article on barbell training as medicine, a minor tangent), death is a part of life.

This is where that first verse comes in. Do not be surprised! Suffering is the norm, not the exception.  People suffer in different ways, just as they die different deaths, but it is normal. You don't get to skip it. Brittany did and called it death with dignity.  I disagree.  She argued that she should not have to suffer. I disagree. She argued that there was no purpose in her suffering.  I disagree. Sometimes, the purpose of suffering is to suffer. I wouldn't wish it on anyone.  I would cry my eyes out if Brittany's diagnosis were given to me. But, we don't get to choose.  We are not in control. There is a plan and a purpose, but not necessarily what we have in mind.

What is beautiful and has dignity is fighting to stay alive and being grateful for what we have. I used to have trouble feeling grateful. Sometimes I still do. I hate this stupid cancer and wish I didn't have it. It is pretty easy for me to feel grateful now, because I have gotten to see up close and personal what it is like to not have it.

Every day I wake up and don't feel like vomiting before I get out of bed is a great day. You never would believe how grateful you can be for normal poop until you have missed that for a month.  I wish I was kidding.  When water tastes just like water, it becomes the sweetest thing you will ever taste. A normal elevator ride up to the office will bring you to tears because you have a job you are going to and you feel healthy enough to actually be there.  Feeling warm sunshine on your face becomes a kiss from the universe after you have been too tired to get out of bed and even open the drapes for three days.  It is easy for me to feel grateful now, because suffering showed me the alternative. Some people might disagree, but I feel sad for Brittany because she cheated herself and others of the lessons and the grace that might have been seen if she hadn't taken matters into her own hands.  Yes, she was going to die, and I am lucky enough that hopefully, I am not going to die anytime soon, but I will die eventually, and that will be a part of my life I will have to accept too, just like everyone else. In the meantime, I intend to live passionately and purposefully, as much as I can.

This article is a reminder:

Each morning we awaken to receive 86,400 seconds as a gift of life.

And when we go to sleep at night, any remaining time is NOT credited to us.

What we haven't used up that day is forever lost.

Yesterday is forever gone.

Each morning the account is refilled, but the bank can dissolve your account at any time WITHOUT WARNING.

So, what will you do with your 86,400 seconds today?

How do I know today is going to be a great day?

Ha!  When I woke up, I did not immediately reach for my anti nausea meds!  I took them anyway as a precaution because moving about tends to wake the sleeping dragon in my stomach; but still, this is a breakthrough that doesn't usually come till day 10 ish. Today is day 5!!! I am PUMPED. I have some energy.  This is good.  I feel like I can say I have passed through the dark side of this round. Awesome. Now, 15 days to enjoy and get busy having fun before surgery on the 18th.

In other news, I saw this clip on Facebook this morning, and while it focuses on the difference between the way moms and their children see themselves, I think it applies equally to anyone.  We are all our own harshest critic. What a powerful moment for us and these women to see themselves through someone else's eyes. Totally made me cry.

Happy Birthday to Me!

I had no plans for my birthday, because I didn't know what I will feel up to doing.  I am totally okay with that though. Every day seems like a celebration in one way or another these days.  I am taking a look at the last year and what I hope for in the coming years. On the one hand, there are things I want to do, have and see, just as in years past.  On the other, I find myself swirling more around ideas of what I hope to feel and be in the future.  I am also listening for hints from my future rather than trying to prescribe myself a plan.  It's interesting to think about being open and ready for an unspecified question rather than a calculated end goal.  A year of rebirth, rediscovery, adventure, and curiosity.  I am game.

The hubs and I had a nice brunch out. I got a bit queasy, but we left quickly and I got home ok. Stayed the rest of the day in bed watching football, napping or cuddling with the dogs. I talked with family and friends by phone.  I enjoyed the sight and scent of the most beautiful flowers.  It was just a relaxing day. Looking forward to the next 365 and then some.

Throwback photo to my very first day in the world... I really did have more hair then!